If you could teach people one thing about autism, what would it be?


Last month I ran an autism survey, inviting anyone associated with autism to fill out: whether they were autistic, cared for someone with autism, or cared about someone with autism.

It unexpectedly got 477 responses.

 

(Edit- the data analysis is finished! The results can be found in this article: “I ran an autism survey. The results? Quite revealing.”)

I’m still going through the data, and it’s both arduous and eye-opening. But by far the most interesting part was the final question, identical to the title of this article.

373 people gave an answer to this question. When I saw the sheer variety and insight that these answers had, I realised that one article would not be enough for the whole survey. It wouldn’t be right to take ten or fifteen good answers and tack them on the end of a much larger project. Not when there were so many voices worth hearing.

I couldn't find a topic-relevant picture, so enjoy these pictures of Quinn- the lad from Growing up Autistic and the son of my friend Nancy of Myria.com.

I couldn’t find a topic-relevant picture, so enjoy these lovely pictures of Quinn- the lad from Growing up Autistic and the son of my friend Nancy of Myria.com. One of the happiest autistic lads you’re likely to ever meet.

So I’ve given these answers an article of their own.

I’ve included these comments exactly as I received them, with zero editing. Of course, including all 373 answers would be too much (although plenty of answers are duplicates), so I’ve had to select the ones that particularly struck me. There’s just under eighty here.

 

I’m not sure I need to make any further comments about these, except those below in square brackets. I think these voices say enough by themselves.

So here we go: read the following and take whichever lessons you want. There’s plenty of them to take.

 

If you could teach people one thing about autism, what would it be?

Our survey said…

  • “Every person with autism is different.” [I could barely count the number of times this one came up.]
  • “Hollywood does not paint an accurate description of autism.”
  • “We do crave deep friendships but don’t always know how to build them”
  • “That we’re not a burden on society”
  • “That people with autism know that they are different and are usually insecure about it”
  • “It is nobody’s fault.”
  • “if someone with autism says something untactful or hurtful they often genuinely don’t realise the pain they may cause”
  • “It doesn’t look like you think it does”
  • “Just being “tougher” on my son will NOT help him cope with the things he struggles with.”
  • “We have feelings too”
  • “That accommodations for ASD are as valid as those we make for people with physical disabilities.”
  • “we’re normal, the rest of you are weird” [I use this line during every talk I give!]
  • “When you have met 1 person with Autism, you have ONLY met 1 person. Not all are the same. And not all like Rainman either.”
  • “They are not naughty!”
  • “We are different, not less” [several people used this phrase from Temple Grandin.]
  • “That it’s hard for even high-functioning individuals to live “typical” lives”
  • “To give people with austism a chance to explain themselves then try to really listen and understand what they are saying”
  • “It’s nothing to fear, embrace it’s wonderfulness :)”
  • “We aren’t robots. We have empathy, loads of it. We just don’t express our empathy in the same ways. (The ‘lack of empathy’ phrasing a lot of articles use is something that annoys me; it gives the wrong impression. I’d prefer something more like, ‘difficulty expressing empathy’ instead.)”
  • “Be patient and allow us “room to breathe” socially.”
  • “You can be perfectly happy being yourself and be autistic at the same time.”
  • “They are trying 100 times harder than others to do the right thing, so please be kind.”
  • “if people have difficulty learning, try a different approach.”
  • “To see things from the often literal perspective of the person with autism.”
  • “That they feel deeply and care deeply despite the reputation!”
  • “Autism is a neurological difference, not a defect to be “fixed” or a disease to be “cured.””
  • “Look past their tricky moments and see the awesome person they are!”
  • “All people deserve respect and love. All people.”
  • “That my son’s are not weird or stupid, just different to a standard imposed by society”
  • “Don’t use it as an excuse for violence or lazyness”
  • “It manifests quite differently in females”
  • “Don’t think of the problems,think of the possibilities.”
  • “we are awesome” [yep, this person’s got it right!]
  • “To listen to them. Really listen, not just pretend they are. They would be surprised at how wonderful the world can look through the eyes of someone who sees it so vividly. My son teaches me something new every day.”
  • “Even though it isn’t always visible, it doesn’t make it any ‘milder'”
  • “to say what you mean and mean what you say”
  • “Our behaviour can be difficult to intepret.”
  • “Not related to vaccines”
  • “Having autism doesn’t make you less of a person.”
  • “Autistics are beautiful!”
  • “They’re not weird, just wired differently”
  • “That people with autism just want to be accepted for who they are.”
  • “You need to change for their world not try to make them fit into our world” [Again, several people made this point.]
  • “That ‘normal’ doesn’t exist”
  • “To embrace it and see it as a super power not a deficit”
  • “Don’t be frightened of what you don’t understand”
  • “It’s a spectrum condition that’s neurological. We think differently and thus, perceive the world differently. There’s nothing “wrong” with me, I don’t want to be “cured”nor do I want to be patronised by people with far lower IQ scores :p”
  • “if you know one person with autism….you ONLY know one person with autism!”
  • “Outbursts and anger are often due to anxiety”
  • “When given time and their own space, people with autism can be very insightful and creative because they see, hear and feel things the rest of us often overlook.”
  • “That it is not something we need to try to fix about people but instead adapt to their needs”
  • “I am friendly, and even if I can’t show it or communicate it properly, I just want to be loved”
  • “To give the autistic person the benefit of the doubt, they may not mean to be coming across as rude or insolent.”
  • “It doesn’t define the person”
  • “You can’t catch it!”
  • “See ability not disability”
  • “Have patience and listen to the person. They are smarter than you think.”
  • “stop going on about the importance of eye contact”
  • “It’s called a spectrum for a reason. No two cases are the same.”
  • “They really are like everyone else. Only better.” [I’ll admit, this one made me laugh!]
  • “We’re not being difficult or cocky, stating facts”
  • “It’s a condition not an excuse, you can achieve just as much”
  • “to embrace the person not just the difference”
  • “How important it is to screen young kids for it do they can get EI services as early as possible”
  • “They are still the same person they were before the label”
  • “that it’s not because of bad parenting”
  • “About how very differently we can see the world. It’s like comparing radio to television or a movie. It might tell the same story, but not in the same way or with anywhere near the same detail.” [I’ve never heard this analogy before. I love it.]
  • “Like anyone else, we have talents that need help being unlocked”
  • “the strengths of autistic people need to better understood and utilised by the world.”
  • “I don’t think nearly enough is known about sensory issues”
  • “I like myself because of my autism,, not in spite of it. Many others feel the same.”
  • “We are not insensitive and cold, but rather TOO sensitive to everything around us.”
  • “Everyone is unique and autism just happens to be the thing that makes my son unique”
  • “If you help with their anxiety issues, you’ll find some of the odder/ disruptive spectrum issues are much easier to work with”
  • “We are still people” [At least six people said this. Quite revealing.]
  • “To see the person, not just the autism.”
  • “It’s okay <3”
Incidentally, look at this picture of Quinn laughing and tell me with confidence that he's any less of a child.

Incidentally, look at this picture of Quinn laughing and tell me with confidence that he’s any less of a child because of his autism.

Of course, feel free to add your own in the comments.

I am aware that most of my readers already have some sort of connection to autism. But I get the feeling that these messages need to be read by those who autism does not affect. Not just the people who stare in the streets, the “you don’t look autistic” brigade and so on, but those who genuinely want to learn more about autism and how it affects autistic people.

If you know any such people, feel free to send them this way. The world can learn a lot from talking to the scores of people who contributed to this article.

 

Oh, and don’t forget the rest of the survey! Results published in this article here.

 

Chris Bonnello is an autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).

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41 Comments

  1. Yes, we’re weird. So is everyone else. Every person is unique, we’re just bad at concealing it. 🙂

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    • Ha, great description. 😀

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  2. ‘You can be perfectly happy being yourself and be autistic at the same time’
    This is so true of my little boy. He is a very happy little boy!
    There are so many misconceptions about autism but the one which annoys me the most is the one where a person thinks it can be cured, as if it’s a disease. It’s like telling a hoover to be a kettle! All we can do is spread awareness and try to dispel the myths and hopefully with awareness will come understanding of autism.

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    • And we’re getting closer every day. 🙂

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  3. Great post!
    I am not sure what my answer would have been. People ask me what its like to have autism, and the problem is I don’t really know… first of all because I don’t know what it is like to be neurotypical, and second of all because I don’t know what it’s like to be anyone else but me! I guess I would have said to assume the best about people whenever possible… Assume that the autistic child is screaming because he is frustrated or in pain and doesn’t have a way to communicate it, NOT because he is spoiled or just being bad. Assume that the adult with autism seems a little “off” because he is awkward with social skills, not because he is “creepy” or “weird.” Assume that most people with any disabilities would choose to work full time and support themselves if they could… so those people getting disability benefits or living with family members are not just being lazy or making excuses. Assume that most people really do want to be loved, do feel empathy, do want friendship, do want a place to belong… even if they don’t show it in the ways you’d expect.

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    • Thank you, Angel.
      I wish that the need for accomodation was recognized earlier. Many of us grew up before diagnosis was possible. Many seniors are still walking the streets, laughed at, too tired to keep working, but not quite old enough to retire. I would guess that most of my generation missed diagnosis, and only a few of us are self-diagnosed and trying to create new selves free from the need for the old defence mechanisms. The rest are still in the ignorance of our generation, where difference is one’s own fault, and their self-perceived guilt haunts them forever.

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  4. Wonderful.
    Now that “i’ve read these I genuinely think they are almost all valid.
    So i will just say thanks for your list format. I Looooove lists!

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    • Lists are pretty awesome, aren’t they? 😉 Thanks!

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  5. I recently had a mild discussion with a friend (who is NT and doesn`t know about my Aspergers) because we both read an article about autism in which one of the points was that there was no known cause or cure for autism, but it said that professionals were looking for a cure and it talked alot about the possibility of a cure… I told her that I didn`t agree with the possibility of a cure (it was a facebook conversation started by a mutual friend who sent us the article because she knew I liked autism and that she is a child psychologist), so let`s say the friend who sent the article is A and the one I was discussing it with is B. So B said that early intefvention is key, and she said that “some kids are even able to learn their letters”, I responded that some kids are able of much more and that I didn`t agree with the concept of a cure for autism. That first, it`s impossible to find a cure for something which isn`t a disease, and second, we don`t need one. She told me that if there was a possibility of finding a cure, why not explore it? To which I repeated points one and two and told her that if she were to ask an autisitic if they wanted something that would cure them of their autism, they would say no. She told me to ask that person`s family members. I told her why should I ask their family member? That would be extremely selfish on their part if they were to say yes. And if I were to ask the autistic if he wanted a pill that would cure his family of their neurotypicality (lol, I just made that word up 😛 ) the autistic would definitley say yes, and get it done too, if it were possible… So we had a long discussion about the whole thing and I realized the enormous misconception there is surrounding autism… I knew there was little to no awareness where I live, but to have a child psychologist say these things to me… I was shocked… She is very Catholic (as am I) and she told me to “consider that these people will never be able yto recieve Comunion”, so I asked her why (I recieve Our Lord every Sunday, and I haven`t seen any negative side effect, lol), she told me that it was because you have to understand what you are recieving in order to be allowed to recive Our Lord in Holy Comunion… So I was shocked (and tired of pointing out the obvious by this point…) and I opted for showing her instead of telling her and sent her subtitled videos of Jake Barnett and Temple Grandin`s TEDx talks and Carly Feinmann`s story. She told me that she was shocked by the video (the Carly Feinmann one) and that it made her want a cure even more for these poor children who can`t comunicate… I slapped my forehead, and I gave her this analogy… Let`s say we live in this planet, NT`s are the originals here .P, high functioning autistics are inmigrants from some other planet, who will never feel “home” here, but try to, learn the language and somehow learn to function in this foreign world, missing, however, the comfort of their own home. Low functioning autistics are like refugees, they come from another planet and were forced to come to this one. they don`t learn the language or how to function, they try to keep with the customs of their own planet, always feeling homesick and longing for the day they can finally go home. I told her that I would love to work with autuistic children and learn their language and help them find a voice in this strange planet. Make their experience here more comfortable. Does an autistic want to change some things? Yes. Does he never feel quite at home? Yes. We live in a world made for neurotypicals with noise, lights, social situations, etc… And it`s hard. Do I want to change my sensibility? Do I wish I had more friends, or that I could make people understand me? Do I wish somethings came easier for em than they do? Hell yeah… Do i want to change the wiring in my brain that makes me feel emotion the way I do? Do I want to lose the ability to go into my own little perfect world and talk to the people in it? Do I wish I didn`t know all the fun facts I know, I didn`t read all the books I read, didn`t write the way I write, didn`t have the obsessions I have? Hell no… Never, I wouldn`t change that for the world.. My world is better than their world… SO no, I don`t want a cure. i want AWARENESS… Sorry I made this so long, I had to vent… I tried with my family but I need to vent to someone who got it… Thank you for reading if you made it this far 😛

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    • Absolutely no problem about the great long vent- we all need it once in a while! 😀 And yes, I did make it to the end.
      You’re right- awareness of how autism actually affects people will do the world a lot more good than pretending there can ever be such thing as an “autism cure”. Yes, there’s treatment and therapy and methods to help autistic people learn, but fantasising over a cure for someone’s personality is unproductive to say the least. 😉

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      • Hmm a year ago I would have given a different answer (that because a person with autism may have skills that the person sent to assist them doesn’t understand doesn’t make the areas they need help with less real or that we can magically move or strengths around to somewhere more “useful”. )

        Having had two casemangers though who seemed to think if they denied support for well documented and very real issues I would miraculously be cured much like it they did the exact opposite of what I said was helpful in the session where they lie and tell you that you are an important consultant in your care that won’t help either it will just make things much, much worse.

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        • Really sorry you’ve had that experience. I hope there’s a way for you to appeal, or seek alternative arrangements/case-managers.

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      • You are fabulous the way that you are I wish more people were more like you and my fantastic little girl. Much love and hugs. ?

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        • Aww, thank you! 😀

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      • Thank you for reading!! Yes, exactly… It`s kind of like, you can`t cure people from having a brain 😛 And the fact that people seem to think that autistic adults don`t exist is very frustrating!

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    • i just got so frustrated with your friend while reading that i just realised i was holding my breath lol still though, i love, love ,loved what you had to say! thank you for standing against ignorance 🙂 my son is on what the dr calls the sever end of autism spectrum though he is 70% verbal. he is a very vibrant and beautifully unique boy and luckily he is in a school where acceptance is a big thing. he’s made many friends there both ND and NT who will even call to him when they recognize him on outings. even though often he has a hard time directly interacting with them in ways that NTs understand, his friends get this and understand that he apreciates them just noticing him or even just being around him even if they dont converse. they all seem to love him so much and even if its not imediately noticable i see how much he loves them and enjoys their company. i asked him how he would feel about a cure for autism and he said “that just sounds dumb. why would i want to cure myself of myself?” cant describe the pride i feel for my boy 🙂 my son (wolfgang) has many difficulties but is very lucky for the school he goes to. i do fear for him as he gets older. there are soo many small minded and misinformed ppl out there that many of us have to deal with sometimes on a daily basis. it gets very frustrating and i hope he will have the strength to face it head on when needed and learn to self advocate. the thng is, its not autism that needs curing, its ignorance. you tell your friend that i (mother of “severely autistic” child ) said that i would not change a thing about my wonderful boy, but i will turn this world upside down if thats what takes for him to be more comfortable <3 ..sorry, mine was long too lol

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      • Aww Jesse, thanks for responding!! I loved your kind words!! Send lots of hugs (except if he doesn´t like hugs, then virtual internet hugs, hehe) to your boy!! I love love his name!!! You are so lucky to have found such an amazing school and support system!! I wish you the best of luck with your boy and I will make sure my friend receives your message!! I think I really opened her eyes into the world of autism, she´s a very open minded person, and a very kind one too… I hope more talks with her will make her fully understand autism (or the most possible, as nobody really fully understands it anyway)! Lots of love from Argentina!!

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    • Thank you for your comment; I’m enjoying this site, hearing from autistics and those who love them.

      I’m always fascinated when autistic people say they wouldn’t want to be “cured”. I find it even more interesting when you say “my world is better than their world”.

      My first question to you would be “How can you possibly know that, when you have never been “neurotypical”? That’s like a fish that’s never lived in water saying “I would never want to live like that”, or an Earthling who doesn’t remember living on Earth saying “I’m much happier here on Mars”. How can you know if you’ve never experienced it, maybe can’t even imagine it?

      My second question would be “What makes you so sure that improving connectivity between different areas of the brain necessarily affects one’s character or personality? Is there scientific evidence that personality is dependent on brain structure? Some feel that our character is under our control (our God-given free will). I’ve watched my son struggle to understand the world (if that’s possible 😀 ) since he was 2 years old. He’s one of those who is “normal enough for people to have high expectations, but autistic enough to really struggle to achieve them” (Thanks Chris Bonnello; well put!). He’s a smart, wonderful person with a good heart who never wishes ill toward anyone and he’s got a great sense of humor. I don’t believe that would change if the parts of his brain involved in language, social skills and executive function were better connected.

      It’s wonderful that you are happy with who you are; everyone should be so blessed. However, despite the fact that autism is not caused by a pathogen (as far as we know), it’s a condition that can be extremely difficult to live with. There are many conditions: diabetes, arthritis, Parkinsons, Alzheimers, etc. that aren’t caused by “germs”, yet those living with them (and their families) would almost certainly be happier without them.

      Something to think about-you said it would be selfish of a person’s family to want to cure their autism, then you said the autistic would want a pill to cure his family of their “neurotypicality”, if possible. Is “neurotypicality” a disease? Isn’t the autistic in this case also being selfish? Isn’t it a bit hypocritical to say that no autistic would want to take a pill to be “cured” but that they would all give their families a pill to cure them of their “neurotypicality”? Please think about that. You would “cure” NT while you resent others for talking about a “cure” for autism.

      Don’t get me wrong; I love my son just the way he is, and I don’t believe he needs to be “fixed”. I do wish he didn’t have to struggle with things most people take for granted, but that wouldn’t make him a different person.

      Blessings.

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      • Hi Diane!! Love your response!! I see that my comment about “curing NT” was a bit misunderstood, but that´s my fault… I speak English, but I live in Argentina since I´m 8 and for the past 10 years haven´t had much of a chance to practice my writing skills, so sometimes I have a hard time getting my point across… The intention was to point out the hypochresy… I meant that an NT saying that they want a cure for Autism, because it´s hard for them to deal with the autistic person, or whatever reasons would be the same as an autistic person saying they wanted a cure for “neurotypicalty”, for lack of a better word, something NTs wouldn´t want. I had a friend say to me once (it was at a talk about Aspergers, not Autism, but it still applies), he said, “I think people who have Aspergers don´t suffer from Aspergers, but they suffer from society. If Aspies were the majority than NTs would be the ones considered to have a “disorder”, so what we need is to raise awareness in our society to make it easier for these people to live in it”. Sometimes we just have to listen to the autistic person and see what their needs and wants are, because they are probably not the same ones you have. Sometimes you think something is hurting them, but it´s not, and you think something isn´t hurting them, but it is… It´s complicated.

        When I said “My world is better than their world” of course I´m talking from my POV. From where I stand I think my world is awesome. I think if everyone lived over here, they´d be stoked (NTs probably wouldn´t, as I´ve seen my mom and my sister living with my dad an me and they get exasperated, but from my POV, their world is torture). So yeah, not being objective here and you´re right 😛
        I think character and personality are formed out of experiences and that I would be a completly different person without my autism. I always was, for example, a very imaginative person. I´ve always had the most vivid imagination. My sister and I have always done everything together and when we were litle and we would “play act” I would always be the one leading the game, or at least getting it started, because I was better at creating stories. (She´s pretty good too, but she said she always prefered when I let her into my world and work from there). Because I could close my eyes and go into any place I wanted. It´s a bit hard to explain this, and haven´t really done it before, but I´ll try now… My life is a bit like this, especially when I´m alone. I live in this world, with you and everyone else. But I can “transport” myself to other worlds, not tangible, worlds that exist, but only in my mind… It´s complicated… I feel like they do exist, sometimes I´m not even controlling them, or it feels like I´m not, they just are. And they´re mine. They are my little private places where I can go and be myself with no restraints. I see them. I see them just like I see this computer and feel them like I feel the keys on the keyboard I´m typing with. It´s like there are these doors in my mind, and I can go through them and be anywhere. One moment I´m María José, strange little girl who lives in this world but doesn´t understand it, and another minute I´m in another futuristic country and my name is Jack FitzHerbert, a multibillionare genius who owns the worlds biggest technological company, or I´m Angel Backstopper, or Mathew Thorne, and so on and so forth, and I love these characters, and people and worlds and places, and they are my friends and I feel they exist and they make their own choices, and I hear their voices and see their faces and I cry when they get hurt, or even when they die. So yes, I believe I would have a diferent character and personality. I´d probably still love jokes, I´d probably still love cooking, I would probably still suffer from anxiety, but I ouldn´t be the same…

        And for a last comment… I wish there was a way to help with communication skills, I know there are a lot of autsitic people out there who are non verbal or have communication difficulties, but still have a lot to say. I feel that it would be wonderful to cure the “co morbidities” that so often come with autism, but aren´t autism, like anxiety, depression and so forth and so on. But I do not beleive autism is something that should be cured or erradicated. I think we should help autistics better understand this world and adapt to it, but I believe they are not the only ones who need to change, because we are here to stay and it´s not fair to ask us to change everything, the rest of society has to make an effort as well… Of course, I can´t as the world to change in our favor, because that would be selfish and unfair, especially given how we a re a minority. I hope my opinion was made a little clearer and please forgive any problems with my english and feel free to ask what I meant or something if what I wrote is not understandable, and please correct me if you wish, so I can continue to learn. I love having these discussions with well mannered and respectful people such as yourself and interchanging ideas.Thanks for taking your time for reading my original comment and responding and thank you for reading this one too 🙂

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        • Josi, wow, you are a very thoughtful, expressive, imaginative, self-aware person! Thank you for taking the time to describe your “worlds”; I’ve never had much imagination but your description sounds like what happens to me when I read books. I forget where I am and don’t notice what’s going on around me; I’m “in” the book, with the characters, a silent witness. I had a lot more time for reading when I was younger and it was often very hard to come back to the real world! Have you ever thought about writing novels?

          Your writing is terrific, especially if you haven’t used English much in Argentina. Is English spoken much there?

          I think I said this before, but I’ll say it again-it’s wonderful that you are so happy with who you are. You seem like a very strong person. I always feel so bad for people (all people) who seem to depend on outside validation to like themselves. One of my greatest wishes for my son is that he be happy with himself and his life, wherever he chooses to go. He tends to be too hard on himself.

          I think I understand your point of view on a “cure”. I also think that if you ever have children of your own you might understand better how hard it is for parents/caregivers to see their children struggle, especially when they can’t understand what’s going on in their child’s head and can’t/don’t know how to help. Try to go easy on us families, ok? 🙂

          Thanks also for being willing to discuss your Asperger’s. It’s a great thing for autistics who can’t speak for themselves and all of us who are trying to understand. Can I ask how and when you found out about your Asperger’s? Or how you would have liked to find out?

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        • Hi again! So, about perspective. You wrote “I think character and personality are formed out of experiences”; I would disagree. No matter how much evil a person witnesses they can deny it, turn away from it and recognize that they don’t want to go there. They can still be a kind, respectful person who believes it’s wrong to hurt others. I don’t believe science has yet identified where exactly we get our feelings and personality. I don’t think that simply rearranging some neurons would change personality or character, only function.

          I would say our perception of our experiences influences our opinion of others, and of life. And of course, being aware of that can change our opinion! And this is the point I was trying to make with my 2 questions earlier; autism colors your perception of all your experiences with life and people; it affects your decisions. When I hear autistics say they wouldn’t want a cure I have to wonder what would happen if we could magically make them NT for a day, month or year. After living without the burdens of autism would anyone want to go back to being autistic? I can’t believe they would. That would be like a child who could suddenly run and play with the other kids wanting to return to his wheelchair. You’re absolutely right in that we should all be kind and try to adapt when we can and not be judgmental, but that doesn’t eliminate the cause of the difficulty.

          I understand you think Asperger’s made you who you are. Autism did not make my son who he is – autism represses who he really is! For his first 2 years he was the happiest baby ever. People constantly asked me “Is he always this happy?” and I said “Yes!” Then autism manifested itself and he became frustrated and angry, almost always on the verge of a meltdown for reasons he couldn’t explain. He seemed to lose interest in people, I believe because interacting became so difficult. His difficulty communicating led him to resort to physical aggression (fortunately this only lasted a few years). But that wasn’t him – that was autism! His autism doesn’t allow him to feel or be himself.

          I’m not hoping to change your opinion on a cure; it’s perfectly natural (and wonderful!!) that you feel the way you do. I’m not sure you object to a cure; it seems maybe you object to the idea that others want to make you more “normal”.(?) I guess I’m just hoping that you’ll understand that NT loved ones aren’t necessarily being selfish in wanting a cure. Obviously I can’t speak for all, I can only say that I would cure my son’s autism not out of selfishness, but for his happiness, so he could be himself. I’ve witnessed with a NT’s perspective how unhappy the various burdens of autism have made him at times, especially when he was little.

          He can’t even imagine living without autism (I don’t think anyone with autism can), but I don’t have to imagine living with autism, I’ve witnessed it and I’m familiar with all the emotions my son has experienced: frustration, anger, isolation, loneliness, confusion, self-doubt. I know I wouldn’t want to live with the added difficulties autistics have described. I don’t have to be autistic to know that I wouldn’t want to have to overcome those challenges, just like I know that I wouldn’t want to have OCD or ADHD or any other neurological condition. I don’t want it for my son either. Who would? If they discover how to prevent the manifestation of autism, no one would suffer by it’s absence. We can all be wonderfully “weird” and “different” and function together without the added emotional turmoil!

          If you’re still reading, thanks for taking in a bit of my perspective! If you don’t mind, I look forward to reading about how you were told of your Asperger’s, or how you wish it would have been handled. I’m pretty sure my son is ready to be more open about his autism, and I think it would do him good; I’m just not sure how to start the discussion, since he hates discussions! :/

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          • Hi! I loved what you wrote when you said “He can’t even imagine living without autism (I don’t think anyone with autism can), but I don’t have to imagine living with autism, I’ve witnessed it and I’m familiar with all the emotions my son has experienced: frustration, anger, isolation, loneliness, confusion, self-doubt. I know I wouldn’t want to live with the added difficulties autistics have described. I don’t have to be autistic to know that I wouldn’t want to have to overcome those challenges, just like I know that I wouldn’t want to have OCD or ADHD or any other neurological condition. I don’t want it for my son either. Who would? If they discover how to prevent the manifestation of autism, no one would suffer by it’s absence. We can all be wonderfully “weird” and “different” and function together without the added emotional turmoil!” I can´t help but agree with you there! I really do wish I wasn´t anxious all the time, or that I could understand some things a little better, or that I didn´t have that stupid compulsive need to step on EVERY dry leaf in the sidewalk, because it gets tiring and doesn´t let me get to places fast enough. Or that I didn´t care what color M&M I eat first, or that I didn´t get so anxious when someone else doesn´t care and eats orange then blue then two reds then orange again!!
            To answer your questions, hehe… I live in the North of Argentina, and though kids have English as a subject in school, it´s just the basics and it´s not used in day to day life. A lot of people, and everyday more, study English separatly, and we have schools and various institutions with very good English programs, but it´s not part of everyone´s daily life and you don´t here people speaking it. I know there are bilingual schools in Buenos Aires where they speak English all day and have classes entirely in English to promote the whole bilingual thing. But we don´t have that in Salta.
            Another thing we don´t have in Salta are professionals specialized in ASD and much less Aspergers, these are very misunderstood and hardly even known in these parts… There are people in Buenos Aires, but not in Salta, or any part of the North West of Argentina (Salta. Jujuy, Tucuman…)
            I am not, therefore, officially diagnosed, I don´t have a piece of paper that says I have autism.
            I learned about autism by accident. I was investigating about the effects music has on the brain and one thing led to another and all of a sudden I was reading about autism and I was fascinated. The first thing I read was that it was this horrible, terrible thing there wasn´t a cure for and how these people are such a burden, and I thought, “I´m going to find a cure someday”, lol… Then I kept studying and stumbled into Jacob Barnett, and said what? This kid has autism? Which made me even more fascinated, and nowadays I can hardly find anyhting I haven´t allready read. If it´s online, I´ve read it. I´ve read short simple articles, I´ve read long essays and books, I´ve read information in English and in Spanish. I don´t really like to form much opinions without have all of the facts. I like to form my own opinions and to know exactly where they came from. I was the kid who always asked “why?”.
            So one day I was reading, I was probably 15, and I was still in my autism is horrible fase, and I start reading about “high functioning” labels and “mild autism” and reading a diagnosis process and the most typical symptoms, and I though “I do that” and then I thought “it´s impossible I have some sort of disorder my parents don´t know about, it´s imposible to be 16 and not have a diagnosis, someone should have noticed”, so I googled, “can a teenager be autistic and not know about it” and I started finding out about autistic people diagnosed as adults, and I learned about Aspergers Syndrome. And I fit the charactersitics exactly, so exactly it was very scary.
            So when I went home I started talking ot my mom about Aspergers, I didn´t tell her I thought I had it (still haven´t) and she was like, oh ok, but wasn´t really listening, and then I went and told my dad about it and he was like “oh, I do that!” and I said, right??? So I kept investigating and found lots of tests on the internet, some official some not. I took all of them, so did he, and we both came out positive for Aspergers every time. But there´s nobody to ask around here. And two of my other brothers fit the description exactly. So my dad is convinced he has Aspergers as well, but won´t openly admit it, and never refers to me as having it, though sometimes implies it, and does the same for two of my brothers, who are basically walking descriptions of the syndrome. My mom, on the other hand, is in complete denial. So I just stopped talking to her. I don´t tell her what bothers me or why I feel the way I do or what I´m feeling because I´m just tired of it.
            The other day we had the first ever talk about Aspergers in Salta. Adults with Aspergers came and parents and an organization from Buenos Aires came. It was the first time Aspergers was publicly and openly spoken about in the history of the North West of Argentina. And those people could have been describing me, there would have been no differnce.
            Every single time I read something new about Autism or Aspergers I am more convinced that I have it. I went from being scared to being hopeful to being sure to being proud of it. The only thing that saddens me is the fact that I have nobody to talk about it with. I told my best friend and he was ok with it, but he´s the only friend i have and I don´t want to spring this all on him too quick. I´ve talked aboout it a few times, but I still can´t find the perfect way to make him really understand it, because to him I´m my own kind of normal. To him I´m just me, and I love that he sees me that way, and I don´t want to ruin that.
            I can´t find professionals (in Salta) who know more about Autism than me (and I don´t say this to brag, but to show the terrible state of mental health awarenessa and so forth around here!) so I can´t go to anyone. But right now, my biggest dream is to someday get an official diagnosis. I think that when that happens, I will be able to finally be more open with my family and friends with professional back up on my side. I will finally have a name for what I am and why and I would finally be able to tell them, this is why, here, this is how you can help me. I understand now, but I want the people around me to understand as well. Or else it´s just frustating and depressing.
            I´ve gone on and on about this and this is getting very long!! I don´t want to bore you!! I hope I answered all your questions and feel free to ask me more!!
            BTW, you probably said it, but, I was wondering, how old is your son?

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            • I forgot to answer your question about how I would have liked for it to have been handled. I think I understand why it wasn´t seen, I was homeschooled, for example, and my parents didn´t know of the existence of Aspergers… But I spent a lot of time angry at my mom for not seeing it. I wish she would have asked for help back when I was little and we had so many problems… I wish instead of drilling it into my head that I was a bad girl and that I was somehow pretending to be stupid, and her “I know you understand, it has been scientifically proven that you are a smart person you do this just to aggravate me”. I wish they would have just gone for help. I wish I knew. I wish I had a diagnosis, I wish I could be open about this. Because what I´ve heard thousands of times from adults recently diagnosed with Aspergers is completely true, you stop feeling like a broken NT and realize you are a perfectly wonderful Aspie, and there´s nothing to be ashamed of. You start to see where the problem was and what was causing it, and you finally realize, oh! so not everyone sees things like I do? And now, you can start adressing your problems, one at a time, one day at a time, because now you know what they are and why they happen. And also you find out that your not the only weirdo out there, that we have a community and that it´s beautiful!

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          • I´ve been reading your comments again and realized I didn´t answer something, yes, I am in fact working on two novels and a book series, but I find it hard to concentrate on only one and have been short in time. I used to write much more when I was younger before University ate my free time. I have a box full of the short stories and stuff I wrote as a child.
            And, I just remembered something I would like to add on the whole perspective discussion… So I was procrastinating on Pinterest (that site wants to take over my life!) when I saw something (originally from tumblr) which really got me thinking. It was a scene from the third X Men movie. It went like this: Xavier and Storm are talking in a room and Rogue comes in (I don´t mean to sound pretentious or anything, but just in case you haven´t watched X Men or don´t know much about them, Xavier is the director of the mutant school, and he has mind powers and is in a wheelchair, Storm has the power to control the weather and Rogue kills everyone she touches because she sucks their energy. She´s an energy sucker.) So, Rogue asks Xavier “is it true? That they´ve found a cure for us?” and Xavier responds “it appears to be so” to which Storm responds “No, we don´t need a cure, there´s nothing wrong with us”, and there was a comment underneith the screencap that said something along the lines of:
            – “Is there a cure?” asks the girl who literally kills everything she touches, “we´re perfect” says the girl who can literally make rainbows.
            So that really got me thinking about perspective and how that must be how some of us autistic people feel and see things.
            I always like to make an analogy with the X Men and the autistic community… I know that there is a lot of gay analogies in the X Men, and that that was kind of intended. But I would rather think that it doesn´t have any kind of agenda, and it´s just made for our enjoyment and whoever can relate, then awesome… Because, to me, that´s how a good story should be. But, I digress…
            Here´s the thing…
            I see the autistic community kind of like the X Men. The X Men are mutants who are considered weird and a plague and that the normal people think should be eliminated. Normal non mutants, or humans, don´t understand mutants and view them as a danger. A danger to their racem because they have the power to literally exterminate humankind if they wished. So humans act out of fear.
            So, just like with autistics, there are mutants whose powers don´t let them function normally in society and there mutation is very visible, like Beast or Mystique or Nightcrawler. You see them and they are obviously mutants. They can´t possibly hide it. They´re freaking blue! These would be the people on the severe end of the spectrum. The non verbal, stimming, jumping very visibly autistic people.
            Then there are the ones who kind of look normal, but not quite, and they this very clear barrier between them and normal society… You can tell they are not normal, but it´s not so in your face. These are Cyclops and Rogue, for example. Rogue can´t touch anyone without killing them and Cyclops needs to have his eyes covered at all times. The barrier is there, and it´s visible, but you could try to ignore it. These are the people who are on neither end of the spectrum. If you´re in the same room with them for a long time, you can tell there´s something very different with these people, but you might not be able to really see what. But if you were to cross them on the street or see them for just a few moments, you wouldn´t even notice anything different.
            Then there are the mutants who are mutants and different, but could easily hide their powers and lead a normal life if they wanted to. They could pass for a normal old Joe if they want to and care to. These are, for example, Storm or even Wolverine. Or Xavier and Jean. You could see them, spend time with them, be in the same room with them and not even notice there is anything differnt with them. But if you get to know them and gain their trust, you will see their true self and notice the wonders of their uniqueness.
            Then you have Xavier and Magneto. I read this part somewhere, I think it was by Nathan who draws Aspergers comics on Facebook. He says that he sees Xavier like the autistics who accept who they are and think they can live with neurotypicals in peace and understanding. Xaviers think that you can get a neurotypical to understand and respect what it´s like to be autistic and that you could be friends and have a meaningful relationship between an autistic and a neurotypical. And then there are Magnetos. They are the ones who have lost all hope in ever finding a place. They lost hope on NTs ever understanding. They do not want to live in the neurotypical world and think they could not be friends or have any kind of meaningful relationship with one of them…
            Hugs!
            Josi

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            • Hi again-thanks for sharing! It wasn’t boring, believe me!

              First, to answer your question: my son Jordan is 16, diagnosed at 4. We were unaware of autism at the time-when it began to manifest I thought he was just an introvert like me going through the “terrible twos”! He’s never wanted to talk about feeling different from the other kids. We tried putting him in special classes designed for autistic kids but he saw how very different the kids were and resented being grouped with them. I hope when we do talk about his ASD he’ll feel the way you did, relieved. Naturally, after his diagnosis autism seemed to be everywhere! Yet there is still so much ignorance. It makes me angry when people say autistic kids are just undisciplined brats!

              It must be very hard to live where autism is almost unknown. But they are starting to talk about it, that’s good! You’ve only recently learned about autism and your Asperger’s but I get the sense that you could be an excellent advocate for yourself and others. I hope you can get an official diagnosis soon, but if your family doesn’t know that you’re an Aspie try not to think too badly of them, ok? Knowing that there’s a reason for the “weirdness” helps, as you said. But, even knowing, it’s still extremely frustrating when your child is even more irrational than most kids! Your mother may feel pretty badly about being so hard on you once she understands and has a chance to look back on your childhood. You haven’t asked for my advice but here’s what I’m thinking, feel free to ignore it if you like!  (or maybe you’re already doing this!): You said your friend already knows and accepts you for who you are; when you need to talk you could try simply asking him if he would be willing to listen. Or you could broach the subject with a casual comment on how you’re feeling, or something that happened, and see if he asks any questions about it. Or ask his advice. Give him the choice and I think you can avoid overwhelming him. (I’m assuming your friend is NT)

              I’m not surprised at all that you’ve already started several writing projects! Good for you!

              I am familiar with X Men and I think your comparison works very well, except with the major difference that NTs aren’t afraid of people with autism (and have no reason to be). Also, I don’t remember any X Men having any impaired brain function; they all have enhanced abilities. Some of them had difficulty “blending in” because of their extra abilities, but none had what would be considered intellectual, cognitive or social disability. I’m curious; were you disappointed that Rogue used the cure or do you feel her quality of life was impaired enough to understand why she did it? (I think Jean would have, too.)

              Hugs back!

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              • Hi! Thanks very much for your advice! It was pretty great, and yes my friend is an NT.
                Of course, I don’t remember any of the X Men having impaired cognitive functions, but I was only using them as an example or as a parallel, of course it’s not the same thing… (even though there are people who talk of their autism as a superpower) I think Rogue wouldn’t have considered herself “enhanced”at all though… She might have considered her ability as more of a disability… I could understand why Rogue used the cure. I felt sorry for her since we met her on the first movie. Her ability goes so against her personality and it really impaired her from having a meaningful relationship. If I remember correctly I think she killed her boyfriend… So when I saw that image and remembered the movie it got me thinking about this discussion because it is really about perspective. Mystique for example hated the appearance her mutism gives her but learns to embrace her powers. And nts are not afraid of autistics, but most aren’t accepting either. So basically, I didn’t mean it as a literal comparison. And I think I can understand Rogue’s position on the whole cure thing. I watched that movie before I knew anything about autism, I’d have to watch it again now that I’m older and with a different mentality. And I think Jean would have cured herself too. Though her powers were awesome they were also very overwhelming and weren’t allowing her to be herself. She was being controlled by them.
                Í loved reading your son’s story! He seems like a great kid! I too hate when people see autistic as just spoiled brats. I think if someone would have said something and we would have known, my relationship with my mother would be much better, especially, neither of us would feel like failures.
                Í really love movies, they are one of my obsessions, I really get into them and love to give then meanings and try to see everyone’s point of you and fully understand the story. It’s also good practice at watching facial expressions and imitating them. I found myself imitating my favorite characters all the time when I was younger in an effort to blend in. My sister was the one who joined that hehe.

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      • I would like to address your POV on “cures” and my 2 questions from before a bit more, but it’s late so I’ll save it for next time. Thanks for sharing your thoughts, and I hope you also feel free to ask if I’m not clear about something.

        Blessings!

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  6. there’s soo much! first, a meltdown and a tantrum are very different things. when a child has a meltdown it does NOT mean that child is “spoiled”,”lacks discipline”,or even worse “needs to be beat more” (all of wich ive heard from ppl i know and strangers) such misgivings are a discust and show of absolute ignorance. a parent who accomodates their autist child is NOT “babying” or “sissifying” their child. awareness for autism needs to focus more on actually educating those who dont know not just what it is according to the dsm but what it is, and what its like for ppl who are autistic and how to better accomidate them and why such accomidations are needed and why the needs of autistics are valid.(esspecially when it comes to inclussion and sensory issues) also, teach ppl why awareness and acceptance should go hand in hand. btw, i love the answer “just like you, only better” lol my boy has that on a t-shirt

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    • Good points. 🙂 And I need to find that shirt. 😉

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  7. ““we’re normal, the rest of you are weird” [I use this line during every talk I give!]”

    I have felt this way for nearly sixteen years and have never been able to put it into words!! Now, it clicks. This gave me such a good, long laugh. Even now that I’m at peace with my ‘strange’ classmates, and I know that there are times where we’re all weird and we’re all simultaneously correct, I still feel this way sometimes! It’s a lot easier now that I know why.

    Nearly every comment I’ve read so far has meant something to me personally in some way. More thoughts to follow when I finish laughing, sighing, nodding, and clipping the list.

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    • Really glad you found it a good read. 🙂 Especially the bit you quoted- and I really do use it in talks, because it’s true for us! 😉

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  8. I would add that just because some are nonverbal doesn’t mean they don’t understand everything they hear. I would encourage people to be mindful of what they say and never talk about them like they’re not there.

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    • An extremely good one. Thanks!

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    • You are so right. Doesn’t matter what they are doing, they can still hear like anyone else if you talk about them. Seen it in action

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  9. I came from very far to be with my daughter and our 5yr and 2yr kids. Largely non verbal or difficult to can’t understand. I am six months into 24/7 care. School cannot accommodate them. Energy driven, often up to 12 hours a day.
    I delight in their smiling faces, making them laugh(I get to be so silly and stuff). Sometimes the ” look ” for jumping on furniture and other things, works for a minute, sometimes. We found a way to buy an indoor trampoline, and put furniture back in the house, they were going to break their necks.

    I will not hesitate to comment back to someone if they have the gall to say something about how we handle situations in or out of the home. Bright noisy places cannot always be avoided, and we do it as quickly as possible, but a melt down is handled with compassion and understanding, I will tell you that and tell you it will help with any child, or adult for that matter. Educate yourself. My grandchild is different, but so is your child\grandchild.

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  10. When asked to describe my grandson who lives with me at first I didn’t know how to respond so I went home to think about it. This isn’t answer I now give people. Autism and autism people are a rare form of beauty. In the world where we are busy with everyday hussle and bustle where wenwalk around with blinders on my grandson can pick out the beauty found that we most often over look. I use the anology of him and I out on a hike (which we often do) and he will spot the tinniest beautiful little flower and run over to admire it, I would have overlooked it but he sees it. He sees the beauty in things that we take for granted and is truly an untouched beautiful soul! I would never change him even at two and a half!

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    • This is the answer I give people…it says isn’t but should read is…sorry

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  11. Nice article. I love this website… I am proud of who I am with Asperger’s Syndrome. I’m just so tired of my parents giving me pills because of it. On or off the medicine, two things stay the same: I want to be accepted without the medication and I want to be free to be who I am. It’s frustrating that I am literally not allowed to be myself to my mom, but I’m accepted by my friends.

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